Friday, July 19, 2013

Of heroes and hysterectomies

Here is a double dose of inspiration. 

Two heroes who triumphed over their disabilities to attain impressive achievements. And right beside them, parents who not only encouraged and motivated their children but - when needed - actively joined their efforts.

First, a young woman with Down Syndrome, Ashley DeRamus (background here), whose poise, articulateness, insight and confidence belie her disabilities. Ashley by Design is the line of fashion wear she herself designs and markets. 

Ashley DeRamus, clothing designer
Some may still dismiss attire as a peripheral concern. After all people, with disabilities face far greater challenges every minute of every day. But I'm with Ashley. The fashion needs of people with disabilities are significant and demand attention.  

I invest great effort in having C. clothed, coiffed and accessorized beautifully. I believe an attractive appearance projects to the world a positive image of her and of everyone with disabilities. The sight of someone with disabilities who has been dressed shabbily or thoughtlessly distresses me no end. 

And now to a father and son, Dick and Rick Hoyt, each a giant in his own right. 

The Hoyts, Rick and Dick: Extraordinary son, extraordinary father
Aged 72 and 51, the Hoyts have been competing as a team in marathons and triathlons for 3 decades. What's phenomenal about that is Rick, a Boston University graduate, has had CP/quadraplegia since birth. He communicates with head presses on a computerized device. 

Please read two fine articles which tell their stories and include videos as well. One comes from Parade (click). The other is from USA Today (click). Why they have pursued this grueling path will even get the stoics reaching for tissues. (Tip: don't even think of skipping the videos!)

Naturally such stories do sting. They remind us that our children will never "sock it" to their disabilities in the same way. (Although I must confess that Rick's first communication via computer had me dreaming of the same for C.)

Realistically, though, we can revel in the knowledge that exposing the wider public to these high achievers prods society toward our goal: full acceptance and inclusion of those with disabilities.
But then there is the flip side of the coin: parents who abuse their children. 

And the grey area: parents who might be conceived by some as committing abuse but by others as "looking- out-for-their-children's-best-interests". One instance of this dilemma made headlines this week.

The Guardian reports that the Australian Senate Committee is recommending that: "Sterilizing children with disabilities without their consent should be banned, unless it can be proven that the child's capacity to consent will never develop". The article adds that the committee "expressed alarm" at the fact that some parents embraced sterilization to eliminate the risk of rape pregnancy. 

It seems Australian parents have been so determined to sterilize their children that they have been trekking to New Zealand, Thailand and India to have it done. The committee wants that made illegal. 

The parents argue (see this article) that hysterectomies not only protect their children from rape pregnancies but spare them the discomfort of menstruation.

The Guardian called the recommendation "a ban on sterilizing disabled children without their consent". It accepted the assurances of the report that "with appropriate supported decision-making, there will be very few Australians who altogether lack decision-making capacity". But the report concedes that "in exceptional cases, where an individual's ability to consent would never be realized, involuntary sterilization should still be permitted."

My initial reaction was of outrage: Excuse me, why isn't the committee recommending a ban of forced sterilization of any children with disabilities. Why are the profoundly disabled being thrown under the bus? Again.

Then I read the justifications given by parents who had sterilized their daughters: the mess, the refusal of their daughters to shower, change or take medications, the long term effects of medications when they can be administered, etc. 

My views were tempered somewhat - from outrage to opposition. 

Australia's Human Rights Commissioner, Graham Innes, was spot on. Prior to the release of the Committee's conclusion he said: 
"It's a basic human right and it's a basic question of bodily integrity for women and girls with disability that these procedures shouldn't occur unless a person gives free and informed consent for it to occur... we are not currently complying with human rights obligations... we ought to ensure that coerced or forced sterilisation of women and girls, or of women with disabilities should only occur with their free and informed consent and of children with disabilities and for that matter of all children, should not occur at all. [If they can't consent] Then it shouldn't occur unless there's a life threatening emergency." 
He deemed it a form of torture that should be criminalized. Sadly, Innes' apt guidelines (see report) were only partially adopted by the Committee.

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